Health Care Reform: What Does it Mean for the Autism Community?

Families caring for a child with autism often have health insurance, but most of these plans explicitly exclude coverage of the treatments their child needs. Since 2007, Autism Speaks has been working with grassroots partners on autism insurance reform in states across the country with the goal of enacting legislation that would end marketplace discrimination on the basis of an autism diagnosis. To date, 15 states have passed reform measures that specifically require insurers to provide coverage of evidence-based, medically necessary treatments including behavioral therapies, such as Applied Behavioral Analysis (ABA). Similar legislation is pending in about two dozen additional states.

From the beginning we knew that passage of state laws was only a first step – albeit a critical one – and that true autism insurance reform would demand a federal law requiring all types of health plans to cover autism treatments. President Obama even made a campaign pledge during the 2008 election that he would support a federal mandate requiring coverage of autism treatments.

With today’s historic signing of health care reform legislation by President Obama, people are asking “What does this mean for autism insurance reform?” As many know, Autism Speaks, the autism grassroots community, and our supporters in Congress, especially Congressman Mike Doyle (PA) in the House and Senators Robert Menendez (NJ) and Chris Dodd (CT) in the Senate, worked very hard during the past year to include in health care reform legislation language that would address the insurance inequities many families have endured for decades. This language makes behavioral health treatments a part of the essential health benefits that must be included in certain health plans.

There are many questions about what health care reform WILL and WON’T do to help your family cover the cost of the medically necessary, evidence-based behavioral therapies. Let’s consider where things stand.

Will health care reform directly benefit the autism community?

The new health care reform law will curb abusive practices like pre-existing condition exclusions, excessive waiting periods for coverage, and rescissions of coverage. Some insurers will be limited in their ability to set lifetime or annual limits on the dollar value of benefits. This may affect caps on autism insurance benefits in some states.

Does it apply to all insurers?

While the new health care reform law will extend autism insurance reform to some families, not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.

How does health care reform impact the state autism insurance reform effort?

Autism Speaks is committed to autism insurance reform that includes coverage of all medically necessary, evidence-based treatments for all people living with autism spectrum disorders. While passage of health care reform will bring some relief to families caring for a child with autism, there is still much work to be done in state legislatures and in Congress to make effective health care coverage a reality for the autism community and to bring about an end to discrimination of individuals with autism by the insurance industry.

We all know families who have gone to extreme measures, including mortgaging their homes and the futures of other children, in order to provide the best possible services for their child with autism. According to research, families living with autism have far greater medical expenditures and out-of-pocket costs and are far less likely to report that health insurance meets their child’s needs when compared to families living without autism. Health care reform will not end these problems, but it may lessen their severity. That’s why Autism Speaks will continue its efforts to make autism insurance reform a reality for all Americans living with autism.

Videos titled, “Autistic Adult in Crisis Goes Unnoticed” and “Shocking Patient Neglect of Autistic Person” on youtube warrant immediate attention to dangers of managed care and general hospital medical mismanagement of severely autistic patients in California. What we witness here is a FAILURE to care, as in from the heart. There is little intrinsic motivation for many nurses, doctors to really HELP their patients, especially complex ones that require complex care management. So do we need healthcare reform? DO we really need to change a system, when the real problem is heart care reform? As in value, dignity and respect for persons with special needs, the elderly, sick, infirmed, disabled, blind lame? WHERE are the miracle workers of today? Where are those that go the extra mile to help patients?

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